Part 91: Untethered Autism

Hello, and welcome back to The Autistic Writer. Guess what? I’ve got some opinions about what autism is. And so do millions of other autistic people; that’s right, they’ve got opinions about autism, too. Some of those autistic people will have almost identical opinions as me. Some will be a bit different, but with a lot of overlap. Some will have really different opinions than me, but even they will have a lot of overlap because – bottom line – autism is autism.

Does it even matter that we autistic people have opinions about what autism is, or what defines autism? I mean, it should be up to the professionals, right? The psychologists and psychiatrists, and the folks who write up the DSM (Diagnostic and Statistical Manual of Mental Disorders), yeah? Well, no. The thing is, autism is a naturally occurring neurodivergence; part of the same process of genetic mutation that has always shaped all living things. So, we autistic people have always been there, all through human history, long before anyone thought up words like autism and neurodivergent. It was only when medical people, psychologists, and their ilk started noticing us and studying us that they came up with ideas for diagnostic criteria. That started only about 60+-odd years ago, which is not a long time. But over the decades since then, the diagnostic criteria for autism have changed and evolved rapidly. And they keep changing. This is rather bizarre, because we autistic people just carry on being autistic, same as always. It seems then that “official” autism diagnosis is a bit dodgy; the diagnostic criteria changeable at the whim of “experts”. If the criteria keep changing, then it’s quite possible that with the next change, many autistic people could find that they are suddenly not officially counted as autistic. It’s ridiculous, isn’t it?

When diagnostic criteria are formulated for autism, what is actually happening is that the editors of the DSM (or whichever self-appointed “authority”) look at the multiplicity of neuroprofiles in humanity, throw a hoop over a cluster, and say, “That’s autism.” When they change the criteria, they throw a new hoop – it might be a bigger hoop, or a smaller hoop, or they might throw the hoop in a slightly different direction, and suddenly, now, that’s autism. Can we trust this process?

We autistic people are what we are, and the “experts” are just shuffling labels around. This is important, because if some autistic people are suddenly excluded from official diagnoses, it can have massive implications for them socially, legally, and financially. Autism is quite rightly, in many places, legally classed as a disability. This opens the door for legal protection in schools and workplaces, disability benefits, and protection from discrimination. The dangers to autistic people from any changes to diagnostic criteria, therefore, are real.

The professionals who contribute to the research and decision making that lead to the criteria for “official” diagnosis are, by definition, paid for their work. They have careers that rely wholly or in part on their work on autism. This means there is a huge conflict of interest between being fair to autistic people, and bowing to professional, social, political and financial pressure to conform to the current trends in the field. (These trends often emerge for all the wrong reasons, with financial greed a key driver – a subject I will return to in next week’s blog.)

People like the idea of the voice of authority when it comes to any kind of diagnosis, and so they take the opinions of the highly-trained people with letters after their names very seriously. But autism is not the measles, or flu. Diagnosis of autism is a very different kind of thing, and the constant changing of the diagnostic criteria reveals itself to be nothing more than yet another set of opinions. The “experts” continue to be baffled by the complexity of autistic people, and scramble around looking for new ways to define it, while simultaneously bowing to demands from the organisations who fund their careers, and the senior, influential voices within the field.

Recent noises emanating from the offices of the DSM have suggested aytism is being “over-diagnosed” which has resulted in “tweaks” to the wording of diagnostic criteria. “Overdiagnosed” is an interesting term… and by interesting, I mean disingenuous. A diagnosis is either correct, or it is a misdiagnosis. But no professional in the field of psychology or psychiatry would be comfortable admitting misdiagnosis – think of the lawsuits! It’s pathetic really, because we all know what it really means. But this is autism, so no one listens to what autistic people really think about this situation; they just carry on accepting whatever the current whim of the “experts” happens to be.

The use of the term “overdiagnosed” is significant, however, because it reveals the political thinking of the powers that be at the DSM5. If overdiagnosis were a real thing (it isn’t; in reality, overdiagnosis is misdiagnosis, but let’s go with it for now) then it would be saying that too many people have been diagnosed. Too many? By whose standards? Autistic people are autistic people, so why should anyone get to install a quota on us? This quota is one more example of how autistic people are dehumanised by the establishment.

The machinations of the “experts” have cast permanent doubt on the validity of “official” diagnosis of autism, which could have huge social implications for autistic people. I realise this statement might frame the whole blog post as a long-winded way of saying self-diagnosis is valid, so I should probably clarify my own diagnosis. I have an “official” diagnosis of autism spectrum disorder (formerly Asperger syndrome). While on the waiting list for my diagnostic assessment, I self-diagnosed and self-identified as autistic. I do not see the recently suggested changes to the DSM as affecting my diagnosis – the points made in the blog post are not about me. It’s bigger than that.

Self-diagnosis is valid, let me make that clear. In fact, many autistic people spend great time and effort trying to understand autism, learning about the intricacies, and comparing notes with many, many, other autistic people. The internet has opened up communication between autistic people worldwide, and we share vast amounts of information with each other. This en-masse data aggregation is not scientific, of course, and I’m sure the “experts” would readily point that out. I am a passionate believer in the scientific method, but the criticism of the way autistic people gather and share data informally as unscientific is a category error; autism issues are not science issues – they are social and cultural issues.

The mass exchange of information and experience between autistic people has made many of us the real experts in autism. It is time to move away from psycho-medical “diagnosis” of autism, and move to autistic peer-led identification of autism. It is time to untether autism from the professionals.

I will never put this blog behind a paywall. I want anyone, anywhere, to be able to access this content at any time. There are costs incurred running this website, however. So if you like what I’m trying to do here, please feel free to show your support with a small contribution via buymeacoffee.com.

Short and sweet – that’s all for this week. Until next time, take care.

Darren

You can find The Autistic Writer on all your favourite social media channels


Why Do I Write This Blog?

When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism.  I quickly learned that there was a serious shortage of information and resources for adults in my situation.  With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery.  Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers.  I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.

You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.


One thought on “Part 91: Untethered Autism

  1. “I have an “official” diagnosis of autism spectrum disorder (formerly Asperger syndrome). While on the waiting list for my diagnostic assessment, I self-diagnosed and self-identified as autistic.”

    I’m currently on the waiting list but already identifying as autistic. What you describe here is exactly where I’m at now–with all the reading, listening, and identifying I’ve done the last few months, I am very, very clear I’m autistic.

    This is confusing to some people around me, whose outdated images of autism leave them bemused to how this could possibly be true. Fortunately, in other cases, folks around me are explicit about saying things like, “Man, with the way you read and process stuff, I feel like I kinda gotta trust your insights here.” (So grateful for those folks!)

    Posts like this are so soothing for me right now. The loneloness I feel in my most hyperlocal world dissipates when I come online and find people whose internal experiences of the world are so similar to mine in such clear and potent ways.

    Like

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